Welcome

Welcome to the POZ/AIDSmeds Community Forums, a round-the-clock discussion area for people with HIV/AIDS, their friends/family/caregivers, and
others concerned about HIV/AIDS. Click on the links below to browse our various forums; scroll down for a glance at the most recent posts; or join in the
conversation yourself by registering on the left side of this page.

Privacy Warning: Please realize that these forums are open to all, and are fully searchable via Google and other search engines. If you are HIV positive
and disclose this in our forums, then it is almost the same thing as telling the whole world (or at least the World Wide Web). If this concerns you, then do not use a
username or avatar that are self-identifying in any way. We do not allow the deletion of anything you post in these forums, so think before you post.

The information shared in these forums, by moderators and members, is designed to complement, not replace, the relationship between an individual and his/her own
physician.

All members of these forums are, by default, not considered to be licensed medical providers. If otherwise, users must clearly define themselves as such.

Forums members must behave at all times with respect and honesty. Posting guidelines, including time-out and banning policies, have been established by the moderators
of these forums. Click here for “Am I Infected?” posting guidelines. Click here for posting guidelines pertaining to all other POZ/AIDSmeds community forums.

We ask all forums members to provide references for health/medical/scientific information they provide, when it is not a personal experience being discussed. Please
provide hyperlinks with full URLs or full citations of published works not available via the Internet. Additionally, all forums members must post information which are
true and correct to their knowledge.

Author
Topic: Is it time to start meds? (Read 8314 times)

Is it time for me to start meds? I dunno. My doc is taking a open-minded approach. Yes, my numbers themselves aren't so bad - BUT - there are a few things I'm wondering about...

If you graph my numbers, it is a steady decline downwards. I know that that in itself would mean only keeping an eye on things. However....

1. I'm CONSTANTLY sick. I clear one cold or sinus infection or illness, and I instantly get another. This has been going on for more than a year now.

2. I'm constantly exhausted. I always feel tired and run-down.

3. I get nasty night sweats. Sometimes more than others.

So I'm wondering, IF I start meds - will these things get better? It's mostly being sick all the time that winds me up. I hate it. I DO NOT want to start meds, but if it means I can start to get back to normal, then I'll do it.

Hmmm... well, of course there are no guaranties with starting meds and that clearing up your other host of issues, but certainly it's quite feasible. Still, it's rather odd that with that cd4 level and a VL that, while a bit high is not in the astronomical range for sure (I lived with a ~35,000 VL for a decade easily).

What does your doctor say about the string of sinus infections and other "illness"es? Many people continue to get night sweats after starting HAART. I'd say the exhaustion, however, is the most likely thing that will go away once you begin HAART and suppress your viral load -- considering that your cd4's are very, very decent already. Again, no guaranties -- and if it occurs it will likely not be instant but gradual.

It's certainly your right/choice to start meds, but with your numbers it's also feasible to wait. I'm not sure anyone here is going to give you a clear cut answer to this. I'm not sure what I'd do if I was in your position, frankly. Your last sentence with the all-caps "DO NOT WANT" seems to indicate to me that you may not be particularly mentally ready to do this yet, but then again I'm not sitting there in a room with you to pick up your actual body language.

I didn't start meds 'til my CD4's were a bit under 300. Of course, I was also in the hospital with a severe case of PCP pneumonia so my starting was a no-brainer. I'd been having night sweats for a few months prior to this. I was also constantly exhausted. It's hard for me to know how much was anxiety, PCP, or HIV. I will say that I was looking forward to starting meds, in a way. I knew the time for me to start was approaching, based on my numbers. I was also tired of the fatigue. More than anything else I wanted to slow down / reduce my escalating viral load. All those issues (and a few more) all went away once I started Atripla. I've taken various prescriptions throughout my life so I wasn't that concerned about compliance or of meds in general. Note that I chose not to start meds when my numbers were similar to yours; I would also probably not if I had it to do all over.

Philly makes a lot of sense about being mentally ready to deal with this. I'd make sure I'd dealt with my anxieties about starting prior to actually filling that first Rx. Take care.

... I knew the time for me to start was approaching, based on my numbers. I was also tired of the fatigue...Philly makes a lot of sense about being mentally ready to deal with this...

Is anyone really 100% ready to start meds? I do know the day will come when it will happen to me ("when", not "if"). Despite how I may have come across in my first post, I am not terrified or emotionally unable to start. I think I used the CAPS because I wanted to make the point that I know what a big deal it is to start on treatment. For me, if it means that I will start to feel better, then I say PLEASE bring them on! I am so incredibly sick of being sick... and I'm sick of being tired. These are almost constant states for me. I don't want to put 2 and 2 together and get 5, but I've not been like this before I was infected so I can only draw the conclusion that my poor health is down to being HIV+. Now I seem to ALWAYS be sick and exhausted. My friends and family do remark on it a lot.

So if I can start meds and help to make things better, then I will. I am curious if any of you think it wil helpl, and/or if any of you have similar experiences. I know it's a big deal to start, and if I was going to start in the coming months it wouldn't be because my numbers were all that awful - it would be because I'm sick. (I have read recently that some studies are now suggesting that MAYBE people should start at around 500). I just know that once I do start - I can't go back.

In my case, I went 10 years w/o starting meds. My body was doing pretty good on it's own though I was tired quite a bit. At the time, I thought it was due to being anemic. After discussing with my doctor, we waited until my cd4 hit 215 before I started meds. I know that is extremely low but that's what I wanted. I started Atripla in September and within a month I was at 265. Just went to the doc yesterday and my cd4 is now at 401. I was undetectable w/i a month of starting meds but I have never had a vl higher than 80,000 and when I did start meds it was at 16,590. Minor side effects from the Atripla even though now I am dealing with depression but I am taking something for that. It is a personal choice of when you want to start meds but be sure you are ready to start them when you do. When I started the meds, the tiredness went away but our bodies are different. I wish you the best and keep us posted.

I have great labs and have had issues with fatigue and neuropathy. I am not on meds. I will deal with both issues w/o them till i get a vl spike or have 500 cd4s i decided.....it is my decision like it's yours. I have no doubt HIV is behind my fatigue. Who knows how hard my body is fighting to keep the VL extremely low and my CD4s high for the moment. When I am beat i rest i dont push.

Logged

If someone tells you potential consequences of a behavior it doesn't mean they jude you or mit they may just give a shit about you

Almost 6 years poz without meds and I wonder if I am getting some signs from my body that it is having some difficulties handling things without assistance.

The problem though for me is that I skipped going to a doctor for about 2.5 years, so since half the time I have been poz has been without lab work to compare things I don't have an accurate or reliable picture (in my mind) of what is normal for my body.

I will say that my recent case of shingles (that every doctor and nurse who examined me stated was beyond the worst case they have ever seen) an increase in the frequency of colds, discovering three spontaneous fungal infections in different parts of my body (one on each arm and one on my leg) and recently a sort of cotton mouth feeling. Well that and a CD4 count of 310 VL 20K and % of 16, well I think all the signs are there.

All that said, with all of the above, I'm not assuming the worst (though I admitting a certain reality) and will make a decision based off of my next lab works at the end of this month. If it is determined that it is time, then I will (ready or not....NOT) start meds, and here is where I hope my story has something of worth to you.

I've learned through my partner, and people on these boards, most recently by the sterling example of Debra - that meds are but a natural way to continue or lives when living with this virus. That may sound strange and that may even sound crazy (and albeit some old timers who have had issues with their meds may shake their heads) but as a person with HIV, one learns to renegotiate their definition of what natural and normal means - and somehow the epitome of that definition is just accepting that anything that keeps you alive and functioning (in all capacities possible...when those aren't fully working there are entirely new issues raised) is natural.

I don't know if I helped or hurt you with my post here, but I gotta admit that I am grateful to this board for having such a large and diverse community that always seems to allow one to find someone in a similar situation.

meds are but a natural way to continue or lives when living with this virus. That may sound strange and that may even sound crazy (and albeit some old timers who have had issues with their meds may shake their heads) but as a person with HIV, one learns to renegotiate their definition of what natural and normal means - and somehow the epitome of that definition is just accepting that anything that keeps you alive and functioning (in all capacities possible...when those aren't fully working there are entirely new issues raised) is natural.

Well said Iggy.

I don't blame anyone here, but I just don't understand why some let their immune system deteriorate so badly before taking meds that can bring it back to normal. As Newt pointed, there is more and more evidence that the sooner we begin the medication the better will be our health after.

Personally (and with the luxury of hindsight), I'd start the meds sooner if I was where you are (or at least begin trying to get your mind around taking the plunge in the very near furture). I look at it as empowering myself over the virus with a fierce weapon, rather than waiting and watching numbers decrease and delaying what is likely inevitable.

Learn about the meds as much as you can. See what fits in your profile and the possible sides and what you think you may or may not be able to deal with (you are likely to even find a combo that is well tolerated or minimal sides). And, as others have said, many feel markedly better with the meds (I sure as heck did - with a lot of the gum infection and seborheic dermatis issues clearing).

But ultimately you have to do what is best for you. You still have fine #s and time to decide.

Wish you well...Mike

Logged

"Get your medical advice from Doctors or medical professionals who you trust and know your history."

"Beware of the fortune teller doom and gloomers who seek to bring you down and are only looking for company, purpose and validation - not your best physical/mental interests."

"You know you all are saying that this is incurable. When the real thing you should be saying is it's not curable at the present time' because as we know, the great strides we've made in medicine." - Elizabeth Edwards

Well, as for me I would have started meds as soon as I tested pos. Regardless of labs.Just knowing the virus is active creeps me out. I love getting those "undetectable" labs.But thats just my 2 cents.

Cheers everyone. It's very interesting all your advice. I can see that at the end of the day it's a personal thing. I can't help but get the feeling that it really may be time for me. I know it's a big step and important decision but I can't get over feeling crap constantly. I'll need to bump up my next appointment and have a word with my doc.

Plus, yes, treatment, initial side effects aside, does make you feel better as a rule. It is odd this aspect of treatment is rarely discussed.

- matt

I really have to agree with that !...

Prior to starting on meds, fatigue was the biggest issue that I was dealing with. This was going on, and building up over a period of about a year and a half, prior to starting on meds.

I have to say though, ( and I have said this before.)...I didn't realise how bad I was feeling, and for how long,.. until I started on the meds , and started feeling better quite fast. My energy levels came back. I stopped sleeping 15 hour days, and went back to sleeping 8 hour days. Appetite improved, weight came back. I know everyone will have different reactions to the meds, but overall, I did pretty well !

I guess I am the odd man out. I waited til my cd4 got to 215 before starting meds.My viral load never got higher than 80,000. That was my choice and I am not knocking anyone who wants to start them as soon as possible. And maybe Newt has a point but I am glad I waited as long as I did before I started meds. I went 10 years w/o them. I did not have any health events because I waited so late. I never had an O.I. but only developed a bit of thrush. I justed started meds September of last year and w/i a month I was undetectable. Now 4 months later I am still undetectable and my cd4 has risen. So, I don't consider it a bad thing that I waited so late to start meds. Just saying.....

I wish this were easier! If it were just my numbers, I wouldn't be having this conversation now. But it's the feeling sick all the time that's making me think. It's affecting my work now. I've never had so many sick days in my life. I guess my worry is that I'll start meds early and then it won't make things better....

OOoooh sorry, I see I repeated myself on your thread.....Hmm, that's a first. Sorry that you have such a hard time making a decision. Don't sell yourself short on the meds. You won't know how they will affect you until you start. And you might start with a combo that will work for you. I guess I am saying you will never know until you try. I know I sound brave now but I was nervous about starting them at first too. And if you decide to start and one set of meds doesn't work, try not be discouraged, there are a lot of them out there.

I think Queen got the right words here : "You won't know how they will affect you until you start"

Ldn, if you fear side effects , I'd like to remind that post-study data review of the Smart Study showed that individuals that started medication with higher Cd4 levels were less likely to have severe side effects.

I don't blame anyone here, but I just don't understand why some let their immune system deteriorate so badly before taking meds that can bring it back to normal. As Newt pointed, there is more and more evidence that the sooner we begin the medication the better will be our health after.

Jacques

I agree with Jacques on this one. Meds are what keep us alive with this disease. You really ultimately have two choices: don't take meds and let the virus chew away at your immune system until you get an OI and possibly die, OR you can take the medicine that science has provided for us and live a near-normal or completely normal life. Meds today are much more easily tolerated than they used to be. A couple of doctors I have talked to who specialize in infectious disease have mentioned that if they were to be infected with HIV today, they'd start taking meds the same day, regardless of their CD4 count.

I chose to start meds extremely early on in my infection (only a couple weeks after I was infected). My CD4 count rebounded very rapidly and I feel almost normal. And I'm not even on the mildest regimin (Kaletra can be a little rough around the edges). But I took control, beat the heck out of the virus with meds as fast as I could, and allowed my immune system to flourish. People with CD4 counts that are severly inhibited often times have difficulty ever returning to normal counts over time (greater than 600 or so). You do NOT want to allow your immune system to become permanently disabled. Having low CD4 counts comes with a host of heightened risk factors, such as OIs and increased risk for cancers like kaposi's sarcoma and lymphoma.

Most of that can be avoided by simply taking the medicine scientists have worked so hard to develop to save our lives. If you are getting sick constantly, and have CD4 counts in the 400s then your immune system is impaired. You of course need to make the choice here, but I suggest starting medication. The virus isn't going away and its not going to get better on its own.

one thing I would mention to you is to remember to be thankful that you do have this moment in time to consider you options, and how very many options there are nowadays. take advantage of this time to get informed and get prepared for when you do finally start a regimen.

After the doctors kept me in the hospital for 4 days and kept me from dying from PCP, two weeks later, I started meds with 6 tcells and over 3,000,000 vl. When you find out that way, you start taking whatever they tell you ASAP and to hell with the side effects. I thought it was better to be covered in rashes, puking my guts out and getting my viral load down than being dead. That's a very scarey situation to say the least.

It doesn't sound like your situation is anywhere near as dire as mine had been (and aren't you glad? LOL), so don't fret about the meds too much. You're a lot less likely to have as many side effects starting from with that good of health, and it'll be a lot easier to handle any side effects if you do have any.

mikie

ps sometimes there isn't any choice about starting meds early enough to stave off any deterioration.

i started meds in terrible health because, all within the prior two years (1994-1996), my partner and I had gotten the diagnosis HIV+, my partner had been gravely ill and then passed away from AIDS, and I had tried the only regimen (AZT monotherapy) and had stopped it because it was killing me faster than my partner was dying. Then I was hospitalized with PCP and my HIV became teh AIDS. It all happened too fast back then (i hadn't even heard of "viral load" until in the hospital, much less tested it!) without enough to stop it in time. I'm only here today, and my late partner isn't, because the meds are so much better now in fighting this bug. Of course there's always the possiblity that we would both still be here and be better off if we had tested sooner and known what to do - but that was back when there things were unknown and options were few. I'm sure though that there are still many people today who never get the time the time to worry about whether to start to the meds. If you don't test early enough, you might not even know until it's nearly too late.

See what I mean about being thankful there are so many options available today? It's not always a life-or-death situation to decide to start the meds. You can pick a good time (get time off of work, get soups, meds, etc laid in store just in case you have a bad time starting off). Good Luck when you do start the meds - they kill of the virus and that's gotta make you feel better!

You've all been brilliant. This website has been such a comfort to me - I know that I can always come here and I'm not alone.

Commenting on the most recent posts, thank you. My current concern about being sick constantly - including right this very moment - outweighs any concerns I have about side effects. I know it's a big decision and that there will be lots of options and help for me when I start. I also know I can come here and have a chat with you all. To be honest, if I'm going to suffer a side effect I hope it's weight loss - I still haven't shifted that stone I piled on over Christmas!

I'm pretty much made up my mind. I'm going to phone my clinic Monday and get back in with my doctor as soon as her next appointment is available. I can't bear the thought of feeling like this until late April. I at least need to be proactive.

Glad to see you decided to get proactive with your health. Make sure you write down your concerns and discuss them with her. I'm sure once you both put your heads together that you will come out with something that will be satisfactory for you.

I've learned through my partner, and people on these boards, most recently by the sterling example of Debra - that meds are but a natural way to continue or lives when living with this virus. That may sound strange and that may even sound crazy (and albeit some old timers who have had issues with their meds may shake their heads) but as a person with HIV, one learns to renegotiate their definition of what natural and normal means - and somehow the epitome of that definition is just accepting that anything that keeps you alive and functioning (in all capacities possible...when those aren't fully working there are entirely new issues raised) is natural.

This "old timer" thinks the Igster has hit the nail on the head here. What was true for me in 1996 when we had a choice of only four or five meds in two classes does not hold true today.

I am always renegotiating what is normal for me. As we Hivers age, it becomes even more important. Trust me on this.

As for your question, Ldn+, my advice would be to first have a talk with your doc about starting meds. I started when my CD4s were in the 400s and haven't regretted it. Now, it seems, those that research these types of things are again considering upping the ante and recommending treatment when CD4s drop below 500. That was the level, by the way, that it used to be set at when I started meds.

This is all part of the renegotiation process, as far as I see it.

But, as Newt said, few people mention how much better people often feel when they start meds. The fatigue, night sweats, etc., all may diminish.

The bottom line will be up to you, though. If you feel you are ready and would benefit, I would say go for it.

I went to my clinic for a drop-in on Monday. They said that it was good that I did (I had been feeling a bit weird about it... was I over-reacting?) . We discussed how awful I've been feeling lately, as well as my symptoms. The doctor agreed that it was "interesting" that my numbers weren't too bad but that I was symptomatic. She let me know that - ultimately - it is my decision about starting meds, and that I have to be ready for it. We talked about what it means to start.

Two months ago I would have been terrified about starting, but after being ill since last autumn (and feeling especially AWFUL for the past month), and after doing research on meds and chatting with you all and mates about it, I feel very ready now. My numbers have been steadily falling so assuming that my symptoms continue I'll probably have to start them in the next couple of years anyway. If starting now is going to improve my quality of life (which, being honest, is RUBBISH right now), then I say let's do it. I don't think it'll be easy, the first pill will probably be "an experience", and I'm going to have to be really careful about adherence (I'm really bad with pills), but I've got loads of support out there.

My clinic has been brilliant. I spoke with a doc and a nurse on Monday, they asked loads of questions and chatted with me about potential courses of action. One doc gave me a little "mini physical" check. They drew more bloods to check my numbers again and to make sure that my symptoms aren't the result of something else being wrong with me. Then next week Wednesday the team leader doctors are going to discuss my case, and I'm going to see my regular doc on Thursday morning.

I'll let you all know what happens. Thanks again for all your support and kind words. :-)

Glad to see that you have hooked up with a doctor and things are being taken care of. I know what you mean about the pills. Maybe you should consider getting a pill box, that's what I used when I first started meds and now I just remember to take them on my own or talk to your doctor about putting you on Atripla, a once a day pill. I hope you will start feeling better soon.

Cheers Queen, if I go on meds I'll look into all that. I don't know if Atripla is approved in Britain yet (but I do know its coming).

I was chatting with mates who are on meds, and we were discussing options and how important it was for me to consider what I might start on. It'll be interesting to see what my doctor thinks. I can foresee the problems with starting - Nevirapine isn't an option as my CD4 is above 400 (or at least it was last time). Efavirenz is a problem as I've suffered depression before, and I don't want this to kick me back down that path again. I know there are other combos out there...

My doc (in Liverpool) and I discussed Atripla a few months back and he told me that while it will probably be approved here, it probably won't be used much. Price is the reason. He said they will be more likely to keep prescribing that combo in two components (Truvada and Sustiva) because they are still only taken once a day. The advantage of taking one pill instead of two won't justify the extra costs to the NHS.

"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

I've never understood why people think popping one pill vs. two is some marvelous improvement. It's just a tired marketing gimmick.

Me neither. And the fact that the pill (Atripla) is so damned big that some people are resorting to cutting it in half... kinda defeats the purpose, no?

And on a side note, a friend of mine is on this combo and takes Truvada and Sustiva. He takes the Truvada in the morning and the Sustiva at night because after much experimentation, it seems to lessen the side-effects (from Sustiva) for him. You can't do that with Atripla. Just sayin!

"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Yeh, I'm sure cost comes into it. I'm honestly not so fussed with the once a day thing - if I have to remember in the morning then I can remember in the evening. The 2x a day pills look big enough anyway.

Well... after consultation and more blood tests, I will be starting meds next month (I've agreed to take part in a drugs trial first). My doctor has recommended Efavirenz and Truvada. I feel very positive about starting - that I'm finally DOING something about feeling so crap the past few months. My doctor agrees that it's a very reasonable course of action to take.

I do want to chat a bit about drugs with everyone, but I'm a bit rushed off my feet at work at the moment - so could only do this quick post. I'll definitely be in touch again...

I'm doing the drugs trial because they asked if I'd like to - they are looking for gay men who are poz and ready to start meds. I'll start my own medication afterwards. I'm sick YET AGAIN so I'm really really really looking forward to it now (though I am nervous about the depression side effects).

I wanted to start med in my case but my doctor in HK wanted to wait more..my numbers are a lot worse than other people, but my doc is hoping there is a continuous upward trend, also i believe it is cost related because it is government clinic....i got my result in Feb, it was highest so far and I have been quite healthy (touch wood!)...many of my friends (without HIV) got sick more than i do...so I decided to wait for another 3 months and see what happens.

Flu is everywhere in Asia - they actually closed down all primary schools today because there have been 3 cases of deaths in children due to flu. i m super careful these days regarding my health.

again, starting med is a good thing as long as you are ready and will comply to it. i will request to start if my number deteriorate.

I'm sure you know that different people respond differently to the virus. Are you more recently infected? If so, you could have a numbers dip then start heading upwards. If your doctor feels you're on an upward trend and you feel ok, then you're probably ok to wait on meds. Your CD4 and % are rather low, but so is your Viral Load. But if you feel like you need to start now, then don't be afraid to tell him. Don't hold back on telling or asking your HIV doctor anything. If you feel you can't, then you should change your doctor. I moved clinics because I didn't feel completely happy with the care I was receiving. In my new place, I feel VERY well looked after and I trust them 100%.

My numbers aren't nearly as low as yours, but in my case I've been ill since last August - and very ill since January (recently developing a mild pneumonia). On top of constant colds, sinus/chest infections and the flu, I've become symptomtic... skin problems, night sweats, a re-occurance of eczema, gum problems, etc etc etc. For me, it's the right time to start. I'm so sick of being sick and my quality of life has been so rubbish, I'm actually looking forward to it now.